Anyone with Central Pontine Myelinolysis

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Hi anyone out there have any information on central pontine myelinolysis , my 26yr old son has been diagnosed with this condition. He has been in hospital for 6 weeks and spent the last 4 weeks in intensive care, he went into hospital on Christmas eve after having seizures to do with alcohol withdrawal the first couple of days he was doing fine then things started to go wrong. He started to loose his balance he started slurring his speech and was getting very confused. He then lost his ability to swallow then started to slip into a coma at which point intensive care induced him into a coma and we were told not to expect him to survive. A week later he started to come round and could breath for himself but could only use his eyes,3 weeks later and he can communicate by blinking his eyes can squeeze my hand with both hands can wiggle his toes and can understand everything we say to him. We know we have a long way to go and don’t know what the long term recovery is but would be grateful for any info from anyone who has come through this condition.

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My father (67 year old) was diagnosed with CPM 4 months ago. He was admitted into the hospital due to lower sodium and potassium and ran into CPM complication as probably rate of sodium correction was faster than his brain was able to tolerate. He stopped speaking, swallowing and went into coma.

After 3 months, there is some recovery. He is able to blink his eyes and lift his fingers. He is still not able to speak etc. I wanted to check if you know how the recovery looks like for CPM patient and if there is any thing we can do to expedite the recovery.

Thanks again,

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i stayed in hospital for 9 months. it was month 3 that was blinking eys and moving toe and fingers. i’m 57 and it took 2 yrs to be able to walk with cane. a lot of work was involved

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My son in law was just diagnosed, he went to the hospital because of vomitting, and stomach pain, and the alcohol symtoms. they put him out for 7 days and then brought him out of that, he was unable to walk speech was not the same( vocabulary) spent 3 weeks in the hospital, he is home now my Daughter says he still needs to use a walker or a wheel chair for long distances, is unable to make a sandwich (motor skills) he is depressed recently he is unable to talk for 15 20 min upon waking, she says he thinks he is saying words but its garble, she is afraid it is getting worse, does it continue to show new symptoms? What should she look for. She really knows nothing about this , just what she has learned from the doctors, and online. she said his legs are painful, sensitive, and gets very cold. Could you please give me some info so I could help her. They live in new orleans, I am in michigan, which is very hard on both of us. Thank you

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I am a central pontine myelinolysis survivor and trying to find more information about rehab and treatment.

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Hi, I have CPM and have had it since 2005. I am so sorry to hear about your sons condition and appreciate that your original post was written some weeks ago. May I ask how he is doing now? Please ask me anything that you wish and I will try and answer the questions as best I can.

Best wishes,

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